Your Stories: My 7-Year AS Diagnosis Anniversary

Hi all—it’s been seven years since my diagnosis of ankylosing spondylitis. For such an anniversary I was inspired to relay this personal story towards diagnosis.

I believe the foundational roots of AS began when I realized how little control I had over my mother’s declining health. She suffered immense pain from stage 4 cirrhosis and had a few years to live at most. With her encouragement, at 23 I made the hardest decision of my life to move away from home and begin my career after college. In between completing college and the start of my career, I was able to spend six beautiful months with her and will never forget the strength she displayed on the road to her eventual transition from the physical. She heavily encouraged me to take the once in a lifetime leap of faith and reminded me that life doesn’t wait. Her strength I hope will show in the story below:

The move from Texas to Seattle humbled me, and I felt like I fell into a new world coupled with starting the first professional job of my career. These positives, however, were overshadowed by the longing for my mother. Plus, after 4 months of living in Seattle, the area on the right side of my Achilles became inflamed to the point where I had to wear a stationary boot to get around. Being 23 years old, one is ignorant of the possibility of having arthritis, as society dresses this condition up as an “old person” disease. The purpose of this story is to tear apart this thought process for the hope of helping others in any age group on a more efficient pathway to diagnosis.

The inflammation hit my body like a wave, and before I knew it, I was crawling to the restroom each AM due to the overbearing pain along the right Achilles and left hip area. Through stretching my hips and numbing myself with NSAIDs/anti-anxiety medication coupled with the immobile boot, I was able to fool the company I worked for into thinking that I was a somewhat normal 23-year-old kid. Wearing the face of someone who was eager to work/learn while struggling to get to the bottom of my health situation taxed me to no end—hello, anxiety and depression.

The last time I spoke to my mother was when I was in the ER, a few days before her death. I found myself there after exploding on the sixth doctor who promised a solution during a follow up visit. Under protocol the doctor sent me to the ER for suicidal prevention. I’m embarrassed to say that I was extremely negative to my mother—and was more than down in the dumps. In hindsight I can’t believe how selfish I was during her health decline—and regrettably notice the selfish thought process this disease can spin you into.

God works in mysterious ways. You hit rock bottom and must trust that you’ll have the strength to get back up. An eventual call that changed my life a few days later put me on the pathway to healing. I had to lose the most important thing to me at the time to gain perspective and health back. My mother was gone.

Look at me after a failure surgery that was misdiagnosed as ‘Haglund’s deformity.’ The ignorant doctor assumed that the bone of my heel had an outgrowth which was driving into and creating intense pressure along my Achilles region, making it next to impossible for me to walk. Little did the doctors know I was suffering from bursitis, and as they began to shave my bone, the inflamed bursa ball blew up, with an immeasurable amount of pain to follow. The smile shows that I was too doped up to comprehend what had happened during the time of the picture, post-surgery (LOL).

This visual was taken right after surgery—and 2 weeks after my mother died on April 20, 2016. At this point I was searching for reasons to not kill myself as I was back to square one trying to gain an understanding of the pain which at this point immobilized my body—and I had just lost the closest human to me in the world.

No poor pitiful me story; this is more so intended as a story of hope, as much of the content regarding AS seems hopeless. Persistence and never giving in, no matter how tormented I became, led to the eventual reward of diagnosis. My advice: prior to surgery, absolutely get a second opinion from the doctor, and ask for them to take a blood test prior to taking any further action. If you get a high-grade inflammatory marker in the ‘C Reactive Protein’ inflammatory and/or ‘CBC w/ Differential’ marker, this is enough cause for a primary care doctor to send you to a rheumatologist who is qualified to diagnose/treat and put you back on track.

Fortunately, I had and continue to keep a job whose health insurance covers medication to manage my inflammation. This coupled with diet and lifestyle changes has helped maintain my inflammatory markers to standard, and I have come to appreciate life again in recent years. I’ve learned through experience that there are still good doctors out there, and with diligence you will find one who encourages you with healthy lifestyle tips along the way.

In the last years I’ve fallen in love with movement as medicine, learning how to leverage my body in yoga classes to stretch my hips, which simultaneously relieves my low back and SI joint area. I combine these functional classes with time in the gym spent practicing balancing movements to earn the best part of my day, which is reading a book in the sauna to refocus and create distance myself from stressors (technology). I’ve found that this combination of focus on physical and mental health has helped me see this condition (I don’t use the D word) in a new light. Thus, the experience has given me the attitude of a soldier who has control versus learned helplessness we have all fallen victim to at one point or another.

Don’t stop when the medication helps. Use it as a temporary solution on the pathway towards healing yourself–seeing food and movement as medicine. I wish you all well—we are all fierce warriors against this disease.

RIP Cynthia Shea Goosen – I do this for you!